So as half term draws to a close, mummy is riddled with anxiety and daddy with back to school blues! It has been lovely spending time as a family, the first half term where we have all been well, no hospital visits and it has been great! And it’s only 6 more week until the big holidays. Bonus!
So we’ve already told you about the first half of our first week of the hols (daddy had two weeks because he works in a catholic school)…we had a stressful start with Rory pulling his trachy out twice on Monday,
On Thursday mummy and daddy took us to the gym. We went swimming. It was the first time without 2 extra adults to sit on th side with Rory’s machine and it’s safe to say it was chaotic! We all huddled in the family changing room, daddy holding us both whilst mummy got changed, mummy holding us both whilst daddy got changed, (we were already changed) then we each went our separate ways, daddy with Austin through the men’s changing room and Rory with mummy in the ladies and we met poolside.
Both of us loved swimming both times we have been before….unfortunately this time, In a public arena, all the gym members having a relaxing swim or soak in the jacuzzi were subjected to Austin having a meltdown because he decided he didn’t like swimming anymore! Rory sat with daddy in the step. Mummy persevered and eventually Austin calmed down. A lovely lady who was swimming came to same hello and a man with goggles disappeared under the water and we found it magical! Where did he go? 🙈
Upon returning to the changing room, it was a nightmare, each one of us had to get dry and changed at a time, mummy held us whilst daddy got dry, vice versa and one of us at a time got dried and changed and ready for out. Mummy and daddy felt that it was more difficult than hiring the pool but manageable and in time they would gain a new routine.
Friday was mummy and daddy’s 5th wedding anniversary! Nannie & Grandad Hardy looked after us for the first time. All of the grown ups were excited and mummy was free of any anxieties, Nannie and grandad were trained, mummy was certain they would be fine as Nannie has built up hours with us, they looked after us for an hour on their own a few week ago, mummy and daddy weren’t far away, we were both well, this was the start of something exciting.
However, on the way to Nannies mummy missed a call from the community nurse. This already makes mummy really anxious for reasons explained before and so it was really bad timing when mummy was about to leave us for the first time. Mummy ordered a new trachy tube 3 weeks ago and despite Rory not having an in-Date spare, it still hadn’t arrived. As we were going on holiday and the community team cl we for the weekend, mummy was sickened to hear that the trachy wouldn’t be delivered until Monday but they have a Shiley (different tube) he can have if we are desperate. Sheffield always told us that under no circumstance do we put a different tube in, Rory’s tube is a bivona 3.5. And so mummy felt uneasy about this. The voicemail also asked about finishing Nannie & Grandads training, which like we mentioned in the previous blog, following our discussion with the consultant and Nannie &Grandad doing their BLS training at the NHS education centre, we believed to be complete. Ultimate anxiety set in. Mummy was in tears. Daddy was angry. Nannie said we are being failed.
Mummy said that she has a genuine fear that the community team are working against her and think that one day they will take us away, especially if mummy and daddy went out for dinner and left us with Nannie and grandad when the community team can’t decide if they are officially trained or not. Mummy knows this is irrational but Auntie Vicky says that’s what fears are – irrational. Auntie Vicky works with vulnerable families and explained the processes involved in removing children from families and mummy calmed a little. Mummy knows and will argue with anyone who says she isn’t the best mum to us. She says it all the time, she knows she is giving us the best start in life but unfortunately she doesn’t have a working relationship with the community team and mummy feels vulnerable, something that doesn’t come easy o mummy who is usually so head strong and confident!
Mummy took the bull by the horns and rang the Sheffield ENT nurse who without hesitation arranged for two trachy tubes to be on the reception desk for mummy to collect. She then tried ringing the nurse back to get an answer regarding training, the nurse wasn’t available however whilst mummy was chatting to the nurse who answered the phone somebody passed a note to say that Nannie & Grandad H had to complete the final tube change to be signed off. Mummy wishes she had asked who that was but never the less agreed that it wasn’t a problem and later text to confirm that Nannie & Grandad are building up hours and confidence awaiting their final training session and that we had sorted the trachy tubes (due on Monday) via Sheffield. And it’s a good job we had as they didn’t come Monday, or Tuesday, Wednesday……
Since her last blog mummy has had more than one message relating to our experience from other parents who have had poor experiences too. Mummy and Daddy have seriously considered moving across to the Sheffield border for the time that Rory has his trachy. How sad!
So after the drama taking a shine off mummy and daddy’s big day,mummy and daddy went for a drink in the Hollywood Bowl bar (classy) where mummy and daddy decided to be boyfriend and girlfriend almost 10 years ago!
And then went to Prezzo (courtesy of Uncle Craig at Christmas) for lunch.
So mummy and daddy got in their comfies and climbed into bed for a much needed nap on a full tummy and Nannie text, we were super tired as we hadn’t had an afternoon nap and we were 40 minutes short of bathtime routine so if we slept now we would not go to bed tonight…..mummy left daddy in bed and came to get us!
We had a wonderful time playing, a walk to the ducks and Brad at The Furnace brought us some quavers out (for us not the ducks)….we had been to the swings too. Here are some pics…
We were in bed for 5pm and mummy rang Nannie to see how they found it. It’s easy to say you will be fine but the first time you are responsible for Rory and he makes a noise or pulls his trachy out….nobody is really for that. Not even mummy….8 months on!
They said they were fine and it’s just as well because on Saturday Mummy and Daddy went to see Robbie Williams at Manchester.
And went to the farm with Scott, Lou and Katie…
So when the time came all Nannie& GrNdad had to do was feed us, bath us and put us to bed. They have observed, taken part in this routine lots of times! Mummy and daddy weren’t worried…..they knew Nannie & Grandad were capable so off they went to pick up Nat & Big T.
Following the Manchester Terror Attack a few weeks ago,mummy was unsure about going,however the grown ups decided that it would be ok. On th way there mummy and Nat were discussing all of the tactics to stay safe, toilets in pairs, mobile phones on you, eyes and ears open, meeting place etc etc….on the way in their were armed police on standby and lots of police all around. Mummy has never seen anything like it before and it put her on edge. Although her porta-loo experience was probably more to be concerned about…..😷🤢
The concert wasn’t that great,quite disappointing actually but mummy hadnt given terrorism a thought until the end when the lights came up and mummy realised that she had to get out safely and thought about all of those victims who didn’t make it out!
Mummy felt her chest tighten, she held nats hand with one hand and daddy’s with the other and Big T held Nats hand and led from the front, even though none of us said it, we all knew what we were thinking and we made a swift exit through the crowds and out of the ground, we didn’t know at the time but as we were doing that, a terrorism attack had taken place in London. We only knew when we got in the car and switched the radio on. What a world we live in!
As mummy and daddy walked through the door, Austin was jumping on the sofa wide awake! We totally understand how some kids who have regular time away from mummy and usual routine struggle with routine….the first time the boys have been left and Austin is wide awake at midnight! 🙄
Sunday arrived and off we went to Auntie Mandy & Auntie Chloe’s caravan at Filey.
When we got there Auntie Mandy & Auntie Chlo had spoiled us again with Rory & Greedy bears and seaside toys. Then we had a walk round and mummy was reminiscing about all of the Haven holidays that she and Uncle Craig had as kids.
We had our tea and settled in for our bathtime and bedtime routine and sleepover with Auntie Mandy and Auntie Chloe. It was lovely actually, spending time with our extended family and talking about Deano and his wise ways!
Daddy decided to sleep on the sofa bed by our travel cots whilst mummy and Chloe shared the twin beds. They were chatting for ages like big girls. 🙊
When we woke up, we gate crashed mummy and Auntie Chloe’s room, Auntie Mandy came in too. We chilled out watching to in our pjs and the daddy took us for a walk whilst the girls all got dressed.
We had breakfast with the seaside squad and went on some rides.
Because Rory’s trachy change was due, we went back to the caravan and mummy did the tube change whilst other adults were around to watch Austin and help. Auntie Chloe said she found it quite traumatic because at one point she didn’t think mummy could we the tube back in. After this Auntie Mandy & Auntie Chloe left us to carry on our little break at Filey, hopefully more successfully than last time when Rory’s windpipe collapsed and he ended up with his trachy. 🤞🏼
So to keep in with routine mummy and daddy wanted us to nap and it was raining so we all got in the car and headed for flamborough. Sat in the car in the rain overlooking the cliffs, we all had a little rest before Austin woke….
So….our bedtime routine has been exactly the same regardless of being at home of hospital, since day one. It has to be military, there are two of us and as you parents will know, that all important bed time is, well, important. So much so that we have never been our past bedtime. So family parties etc…..a no go! We have never been that baby in a pram at the disco, until today when mummy and daddy were going to attempt to take us out because, well…..we are on holiday. Mummy and daddy had planned to go home on Thursday so we have a few days to get back in routine before daddy goes back to work and so what could go wrong?
We were bathed, dressed (in clothes) and given our milk as usual but were put into our pram. Rather than being asleep – we were wide awake. 🤔 daddy poured some extra milk and put it in the fridge ready for our return to help settle us off to sleep. Off we went to the live lounge, we walked in and it was rammed, not many tables accessible for our bugaboo donkey never mind that were free! However, a lovely lady offered to move into the middle so that we could have her table at the edge, how lovely!
The night took the exact same format as it did 20 years ago, kids club, family games, bingo, cheesy entertainment. A toy shop selling flashy stuff and bubbles to rob parents blind…..mummy felt warm inside remembering sat playing cards with Nannie, Grandad and Uncle Craig. They were always sat good as gold and not skidding around the dance floor. Mummy got us a flashy wand and not much after we dropped off to sleep….
And then as soon as we got outside on the way back to the van, about 9pm, the daylight and temperature change woke us right up! Great! Mummy spoke too soon when she said we had coped really well! And then when we got in she had to fight with our tired tantrum to get us in our pjs and then give us our extra milk ready for bed. 😴
We went for breakfast with seaside squad and then sing a long with Rory…..
We did the Hokie Cokie and on the way daddy noticed the lady who gave up her seat last night and that the little boy she was with had a trachy. Choked up, mummy tapped the lady in the shoulder and said ‘I get it’ before showing Rory’s trachy and the emergency backpack under our pram, closely matched to the one on the lady’s back. We all had a chat and it was lovely to see the little boy in full use of a speaking valve and having plans to go swimming. Wow!
Then as we made our way down the road to the car there was another twin mum coming in the opposite direction, mummy put her hand to her head and said ‘salute’ and the other mummy did it back! She gets it!
We got in the car and made a misty drive over to Whitby! We went on lots of rides in Whitby and had our dinner on the seafront….
We got home and did our usual routine ready for bed (& our second night on the tiles) but this time getting in our pjs.
When we got to the live Lounge, we got a seat and the lady who we were talking to with the little boy who has a trachy came and sat with us. Turns out the lady is his carer and his mummy couldn’t believe it when daddy said that mummy has us both on her own when daddy goes to work. She told mummy that she has a carer 18 hours a day. They were telling mummy about all the different support packages available, either mummy and daddy are totally naive or have not had the right home support to tell s about the support, I mean in hindsight doing 4 hour shifts through the winter nights to stay up on Rory watch would have been much easier with a carer.
Mummy and daddy discussed it at large but mummy decided that although it is difficult she wants to continue as we are because she wants Rory to have as normal a life as possible with a mummy and a daddy and no different treatments to Austin. Suppose everyone’s needs are different.
So we enjoyed the show again….
Before Scarborough we went to the story time session but mummy made us leave early because she found the entertainers to be vulgar using words like ‘fart’during their story. The poor kids go back to school after the holiday and get told off for using such words and toilet humour! 😫
The last time we were all at Scarborough was when we were in mummy’s tummy, mummy was in lots of pain and couldn’t walk and now we know it’s because she was in early stages of labour as we arrived only a few days later (14 weeks early 😳) and so mummy and daddy were reminiscing about that time and the time before when daddy fetched her for her 21st birthday surprise!
Here are some pics from Scarborough, we had ice cream, rides, had our first time on the beach and we even managed to use the tram cart with the bugaboo! 👍🏻
When we got back to the caravan site we spent the afternoon at the park…
The next day mummy cleaned the caravan and we set off home. It was lovely to see Beau Jangles and Nannie, we missed them. Nannie couldn’t wait to see Rory’s teeth.
Luckily we slipped straight back into routine at bedtime and on Friday Grandad called after work, when he walked through the door the smile on our faces reduced mummy to tears. There were times she never thought we would have a bond with Nannie and Grandad because they couldn’t look after us and that is something really important to mummy.
On Saturday Mummy took us to the hairdressers. When we arrived it made it really difficult for mummy to have her hair done at home and so she visited cousins Richard & Kylies salon because Kylie opened up for her very late at night so that mummy could have some pamper time when we were in bed and because we are super fidgety now mummy thought we might benefit from a hairdressers chair and experiencing it for when we are bigger. Especially as our hair grows so fast….
So the weekend involved lots of playtime, more visits to the park, more pizza, Rory eating a full chicken dinner, pizza and then refusing to sleep until he listened to 30 minutes of the Thomas tank engine theme tune on repeat (which also sent mummy to sleep) and then a couple of Scottish visitors (Calum & Mags) to entertain us!
Rory’s Saturday night sleep protest was very entertaining, mummy drove us out in the car and Austin dropped off but Rory sat laughing at mummy’s attempt. Mummy said how much fun it was having 1:1 time with Rory and listening to his silent laugh and his ‘click’ which is his signature sound! Mummy will post some videos in our Facebook page. You won’t be able to not smile! He’s infectious!
So here’s to the end of our first successful half term…..bring on the summer!